Raw uncensored feelings about living with chronic pain while dealing with pressures of every day life.
You may not see our pain but that doesn't make it less real.

Friday, May 31, 2013

Sometimes Life Really Sucks

I understand that some people won't understand this. Some may even think I am a horrible person. You may get mad and say there's no way I could think any of this if I knew what Cancer does to a person. Well, I do know. BUT MOST LIKELY YOU DON'T KNOW WHAT RSD/CRPS AND DYSAUTONOMIA DOES TO A PERSON. Since this blog is about KEEPING IT REAL.... well, here goes.

Sometimes I get tired of hearing people complain about their well know, highly researched and often curable diseases. I understand hearing the word cancer is scary. But the minute people hear that a person has received that diagnoses they immediately understand that there will be tough times ahead. Pain associated with treatments, possible symptoms associated with the disease itself. Reactions to treatments that leave the person feeling ill. Questions, doubts, wondering will treatments work? Will remission or a complete cure be possible? People immediately feel sympathetic and can often understand or relate. Because they know what cancer is. They see a TV ad, hear of fundraising events and a race for the cure.

But imagine waking up in horrible, burning pain. Only to discover that you have a neurological disorder that causes over-active misfiring of pain signals. That your nerves are and will always be in overdrive. The disorder is not well known. Most doctors know nothing or very little about the disorder. There are no TV ads or heartbreaking news stories, no understanding neighbor or sympathetic team standing ready to raise funds or awareness. There isn't even a cure.

You won't hear that after a few months or years of treatments that you will beat this. No one tells you that. Because in a few months or a few years you will not have beat it. You will still wake up in pain. It will still hurt to feel the sheets touch your skin. It will still hurt to feel water run over you while you shower. It will still hurt to feel your toes touching each other. Walking the dog will still cause your legs to ache and your feet to burn. But you will do it because being sedentary will cause more harm to your body. You will move even though it feels that each step ignites a new fire that will burn deep. You will live each day filled with pain. Knowing that you have to fight the rest of your life. Not a few weeks or months of treatments. Forever. The pain will never end. The burning stabbing jolts of electricity will follow you no matter where you go. People won't understand. People can't understand. They will tire of your excuses. Become impatient with your moods. Turn a deaf ear to your words of reality.

I have said before that I wish I could have been diagnosed with cancer. Had treatment. Fought the fight. Come out victorious.

Rather I am dealt a hand that no one can win with. It feels unfair and lonely. Sometimes life really sucks.